Hello,
In March of 2023, I was diagnosed with an AVM on my right temporal lobe. I was reacting to a medication that was causing focal seizures. Because I was having seizures, I was referred to an epilepsy specialist who requested the MRI, EEG, and CT Scan. He said I was a good candidate for surgery; however, the neurosurgeon he works with said I was not. Neither doctor was very helpful, granted, the neurosurgeon specialized in Epilepsy, not AMVs, but they never even showed me my images–I was told to “Google it” (no, I am not kidding). After receiving no help, in 2024, I found an AVM neurosurgeon who performed a cerebral angiogram. He said he did not recommend surgery and that any form of treatment would agitate the AVM and potentially cause grandmal seizures. I was instructed to refrain from any activity that would cause my heart rate to rise or cause strain. My primary care doctor had some questions for him. After receiving zero response after six weeks of leaving messages on the portal, via email, and voicemails, I decided to seek care from this doctor no longer. Now, I am seeking a doctor who is familiar with AVMs, shows me my MRI/CTA images, and is responsive. I am located in Southern California in Orange County.
One thing I can say with your challenges, you are not that far from some of the best reported on AVM facilitates, in my humble opinion, in the world. UCLA is very well known and respected in the AVM world, also if you were able to get your scans Barrows Neurological Institute in Phoenix does virtual opinions and is exceptionally well regarded. While not around the corner a few hours drive away.
I am from Canada but did go to the US for a scan that was a bit longer wait in our system and was able to access all my results on line with an account and password. Here, your GP would be able to get the results very quickly, as they are considered personal information under our legislation. Personally if I was in Orange County, and had the means, I would be reaching out to Barrows and UCLA. Take Care, John.
I was seen at cedar-Sinai with left thalamus avm. I had bleed. Because where it’s located, did not recommend surgery. So I had stereostatic radiation.my neurosurgeon is Nestor Gonzalez MD. Every visit he shows me the mri results and explains what I’m looking at. Hope this helps.
I have an amazing neurosurgeon in Austin, TX who is part of UT Dr. Ramsey Ashour. After my first bleed he sat with my husband and I for an hour showing us the angiogram and answering all of our questions. Not around the corner but another resource if you need.
Welcome to the family… sorry to hear about the lack of assistance from the medical staff you have recently dealt with.
I had a right frontal lobe AVM also that was removed through craniotomy in 2011, I hope once you get the right surgeon they can treat it as required… please keep us posted on your journey & wishing you all the best… God bless!